Targeting Down Syndrome by Regulation
September 6, 2011 http://www.thepublicdiscourse.
Prenatal testing for Down syndrome should not be considered preventive medicine. Such tests cannot prevent the presence of Down syndrome in a child; but they can decrease the likelihood of a child with Down syndrome surviving beyond the womb. Expectant parents need accurate information, including the many positive outcomes, about life raising a child with Down syndrome.
Last month, my daughter Juliet began second grade, where her mother and I expect her to maintain her B+ average on spelling tests and straight A’s in Chinese. In addition to being a loving daughter and big sister, Juliet also is endowed with Down syndrome. At the start of the month, the Department for Health and Human Services (HHS) announced that future births of children like Juliet should be prevented. Down syndrome is the most common genetic cause of intellectual disability and, as such, will be targeted in the new HHS regulation’s free nationwide prenatal testing program.
Discussions of HHS’s new regulation have focused on the required availability of free contraceptive services under the Patient Protection and Affordable Care Act (PPACA). The regulation is the result of HHS’s adopting, in its entirety, the Institute of Medicine’s (IOM) report on Clinical Preventive Services for Women. Buried in the IOM report is the recommendation for no-cost well-woman visits; these visits include prenatal care–and thus prenatal testing for “genetic or developmental conditions.” The regulation was issued as part of the PPACA’s coverage of preventive services. This prompts the question, how does prenatal testing prevent Down syndrome?
The IOM report defines preventive services “to be measures . . . shown to improve wellbeing, and/or decrease the likelihood or delay the onset of targeted disease or condition.” Down syndrome occurs at conception. Prenatal testing simply identifies whether a pregnancy is positive for Down syndrome–a prenatal diagnosis after which most women choose to terminate their pregnancy. A prenatal test does not decrease the likelihood of Down syndrome in a person; it does allow for a decreased likelihood of a person with Down syndrome surviving beyond the womb. If this is how HHS is justifying prenatal testing for Down syndrome as preventive care, then HHS has ushered in a program meant to target future children like Juliet.
The targeted elimination of people with Down syndrome is, in fact, the goal of other countries that have adopted nationwide prenatal testing programs–a goal some other countries are now realizing. Indeed, according to the Copenhagen Post, Denmark “could be a country without a single citizen with Down’s syndrome in the not too distant future,” due to its nationwide prenatal screening program, in place since 2004.
Perhaps the HHS is not purposefully trying to sneak in a modern-day eugenics program to eliminate Down syndrome by regulation. It is likely that the IOM report relied on professional guidelines that recommend the offering of prenatal testing for Down syndrome. Actual experience, however, has shown that such tests do not “improve wellbeing”–certainly not for the aborted child, but also not for the expecting parents.
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The author is exactly right–prenatal testing does not “prevent” Down’s Syndrome; it only prevents Down’s Syndrome births.
I have heard this type of testing referred to as “search and destroy”. I have two friends with Down’s Syndrome daughters–I don’t think those girls’ “wellbeing” would be improved by snuffing them out.
This has been part of the ideology of the March of Dimes for decades. Search and destroy before birth.
Having a child with down’s syndrome was right for you. That means its obviously right for everyone. Furthermore, since you have a down’s syndrome who does well in school and doesn’t have significant health problems, that’s how it will turn out for everyone else too.
@Roivas
Having a child with down’s syndrome was right for you.
That seems like a very odd statement. You make it sound like a choice–“Honey, let’s start a family. Oooh, I know–I think I’ll have a child with down’s syndrome!” Kind of like saying “Owning a dog was right for you”, or “Buying a house was right for you” (implication: “but not for me).
When a child is conceived, he immediately has all sorts of characteristics that won’t become apparent until later. Would you say to someone, “Having a child who is a girl was right for you” (but not for me)? Or, since there are claims of a “gay gene”, would you say “Having a child who is gay was right for you” (but not for me).
Furthermore, since you have a down’s syndrome who does well in school and doesn’t have significant health problems, that’s how it will turn out for everyone else too.
So, it’s nice to have smart, healthy children; but it’s OK to kill children who struggle in school, or have health problems? Is that what you’re saying? Because there are a lot of “normal” kids who have learning disabilities or frequent hospital stays.
The author wasn’t saying that having a Down’s syndrome child is easy; he was saying that having a health problem shouldn’t be considered a crime punishable by death.
I’ve seen this line attributed to HHS (“At the start of the month, the Department for Health and Human Services (HHS) announced that future births of children like Juliet should be prevented. “) in several places now. But I only see it in this form as a secondary source. Can anyone help me find the original statement?